PPI
Patient and public involvement and engagement
In the CPTU, we put patients and members of the public at the heart of everything we do. As the trials run by our unit are generally population-based, patient and public involvement (PPI) is especially important to ensure our participants are diverse and representative of a range of backgrounds, experiences and views. Furthermore, the results of our cancer screening and prevention studies are relevant to huge swathes of the population. Active and sustained engagement with members of the public and community groups is key to not only ensuring dissemination but also wide uptake of study findings.
To realise our patient-centred goals, we involve patients and members of the public at both the project and organisation level and have a PPI coordinator to support the sustainability of the work. For each project, we actively involve patients and members of the public throughout the life of the study from grant writing and research design to the results dissemination phase. We also partner with community organisations, particularly those supporting under-served groups, to ensure we can learn from their experiences and perspectives and share study findings directly with relevant participant groups.
The PPI contributors involved in the YORKSURe trial played a key role in shaping the reciprocal design and carefully wording explanatory materials to convey the complex information to potential participants. In the NHS-Galleri trial, the data use and sharing arrangements were a focus of the PPI work. Understanding patient and public concerns around use of centralised personal healthcare data and international transfer of anonymised personal data helped us design participant information materials that were commended by the ethics committee and Sponsor. For YouScreen, the trial team worked with Live Through This (LGBTIQ+ cancer group) to revise the small c YouScreen wording to be more inclusive for transmen. We also had the small c website with speak aloud translations (130 languages) and fully translated PIS in the top 5 languages for each London borough.
To build on our work so far, we are currently organising a standing panel of patient and public contributors to shape the unit’s activities and research priorities, Members of the panel will be involved in key decision-making committees such as the Strategic Advisory Board. We also plan to engage a pool of 50 contributors to facilitate more ad-hoc PPI activities, ensure we can include a range of perspectives and quickly engage people for new projects.
If you are interested in getting involved as a patient or member of the public, you can find out more by navigating to our website for the Research Advisory Panel.
Group level PPI
We now have a standing panel of PPI contributors, who meet regularly and help shape the Group’s activities and research priorities. Members of the PPI Panel will also be involved in key decision-making committees, such as the Strategic Advisory Board.
If you are interested in getting involved as a patient or public contributor, you can find out more by navigating to our
website.
